Charity funds drive research for pediatric brain cancer

“Connor had an amazing life, but he was also robbed of his chance to live his life,” says Liz Dawes, Connor’s mother. So within weeks of his passing, the Dawes family started the RCD Foundation in his honor. And they knew exactly where the funds should go.

“The CERN Foundation is the only valuable resource that focuses on Connor’s disease type,” Liz says. The family discovered CERN when they were searching online for answers after Connor’s diagnosis. “We were looking for medical hope and sadly, there wasn’t much,” Liz says.

Connor’s Run is the RCD Foundation’s main event. It is based in Melbourne, Australia, where the American-born Dawes family has lived for nearly 17 years. The run has tripled in size over the past four years and is the biggest event for pediatric brain cancer in Australia.

The 2015 run raised nearly $500,000 to support brain cancer research, care and management. The RCD Foundation also has shadow events across the United States.

“We want our money to drive more and better research. And to energize scientists to collaborate,” Liz says. “Ependymoma is not going to be cured in one country or in one lab.”

Liz is a passionate supporter of the ependymoma community and believes strongly that people should not underestimate what they can do.

“The CERN Foundation was started by one benefactor. Now, it’s time for ependymoma families to keep it going,” she says.

Small steps to great outreach

The Dawes family’s first donation to CERN was during Connor’s treatment. In lieu of exchanging Christmas gifts, the family donated in Connor’s name.

But Connor’s family did not recognize the extent of CERN’s projects until his passing.

“Connor was diagnosed with a word we couldn’t say or spell,” Liz says. “So during his short journey, we were just learning the basics of the disease and treatment options.” The family worked closely with CERN neuro-oncologists for Connor’s care and sought comfort from the CERN online community.

“We knew we were associating with the very best minds for pediatric brain cancer. After Connor passed, it just made sense to learn more about and support CERN’s projects,” Liz says.

To decide which projects the RCD Foundation would support, the Dawes family met CERN team members who presented suggestions.

“Connor loved puzzles, Latin and brain-engaging activities.” Liz says. He was accepted to Stanford University the day before undergoing brain surgery.

With Connor in mind, the family is helping fund two substantial projects led by Terri Armstrong, Ph.D., head of Patient Outcomes and Symptom Management projects for the CERN Foundation.

The first project is the re-printing of the one-of-a-kind Ependymoma Guide. It is a “soup to nuts” primer on every aspect of ependymoma – from diagnosis to subsequent treatments and how to manage symptoms through each phase of care. (You can request a free print copy or download from the CERN Foundation website.)

The RCD Foundation is also supporting to the CERN Foundation’s Risk Project, which intends to answer the one question that plagues most all patients: Why did this happen to me?

“We are excited about this project because parents are really interested in the why,” Liz says. “You find out from doing research that there is so much more to figure out. Scientists are dissecting and stripping back new information to uncover more new information that could be used to treat ependymoma.”

Events genuine to Connor

Connor was a strong athlete, so creating Connor’s Run as the RCD Foundation’s main event was an easy decision. But Connor’s main sport was rowing and his talents caught the eye of the Stanford University rowing coach.

Unfortunately, Connor never had a chance to attend college and try out for the team. In his honor, the Stanford University rowing team challenged the University of Wisconsin – Connor’s parents’ alma mater – to a virtual rowing challenge to raise funds for the CERN Foundation.

“Events like these just keep popping up, so managing the foundation is a full time job,” Liz says. Even Connor’s younger siblings at 20-years-old and 17-years-old are helping at events and speaking on behalf of the charity at high schools and universities.

“We hope we are a catalyst for good,” Liz says. “We want to be genuine to Connor, to advocate for positive change and to raise money to drive research that will give people hope. And we want to do it for an entity that looks after those with ependymoma.”